Monday, 28 November 2011

An awful lot of Myeloma

Hi again to the world. This last few days has seen Lorna and I immersed in a whole load of Myeloma.
Firstly we spent several days putting together the CD's we are doing of the "Crossroads" single Lesley Roley recorded for us. The art work and the Technical stuff was done by the intelligent half of the relationship,(Lorna, for those who don't know us) and I did the E:drive in and outs with the CD's and pressed the copy button. Then it was off on Friday night to the Hilton Hotel at Birmingham NEC for the meet and greet session prior to the full Myeloma info day starting at 9.30 on Saturday morning.
A funny thing happened on the way to the meet and greet session. I had booked a hotel close to the Hilton, as it was FAR to expensive to stay there. Only "close" was a £15 taxi ride, because my knowledge of B'ham is a bit sketchy after only living there for 50 years! Things have moved a lot in the last 6 years, well I'm sticking to that as my excuse. We met Ellen and Rebecca from Myeloma Uk, who kindly bought us a beer and a wine, and we also met Kevin and Ann, fellow Myeloma patient and wife and we all had a lovely chat about 8 mile runs and things....... not mine or Lorna's I hasten to add, as we are only play walkers.
Saturday morning we replaced the £15 taxi with a £3.60 bus ride, the wisdom of which will be discussed later. This was followed by a 1000 metre sprint..... well fast walk, across the NEC to the hotel. An interesting point that we encountered at this juncture, was that the "Good Food Show" and the "Motorcycle Show live" (not sure what a "dead" bike looks like but still) were both on in tandem with our Myeloma event, so the crowds were a tad on the crowded side as we walked through.
We managed to arrive for the Info Day on time and we sat at the front next to a couple of the celebrities..... well Dr.Mark Cook from UHB Queen Elizabeth Hospital and Dr. Supratik Basu, my consultant from New Cross Wolverhampton. It was a very informative morning, with Dr. Cook talking about current therapies and how survival rates are hopefully on a steady upwards trend.
Just before the morning recess I was invited to take the mike, (no not a dig at the celebrities, I meant hold a microphone) and tell the gathering about the lovely CD's they could have if they made a suggested donation of £5 to Myeloma research. AND WHAT A SPEECH IT WAS!!! Well it must have been because  10 people made a donation and walked away with a wonderful CD ;-), but that does mean we still got 10

After lunch they had arranged breakout sessions with the various celebs, and we felt compelled to follow Dr. Basu to his "side effects and complications" question and answer session as I had got to attend a Monday @3.20 Appointment in his clinic, and wanted his best One of the really pleasing aspects was that he was happy to recommend that his patients (;-) ) go swimming regularly for exercise.... something I really enjoy......WHOOPEE!
When the day was over, we fought back through the crowds at the NEC rail station and stood on the train all the way home, more on the wisdom of that too, later.

Today was the "Later" I was on about. I attended my 3.20pm appointment with Dr. Basu at his clinic, and started the conversation with "Hello stranger". At the Info day Dr. Basu had informed us that he always starts his patients appointments with "Your paraprotiens are...." (he lied) so as usual I asked him! Despite going in a week earlier to give bloods, they were still not available, so we had to go with October's which were a reading of less than 2 again..... Whoopee, no I mean WHOOPEE really, cause it means I'm still holding. The rest of my results were in this time though, and not all brilliant news.  My HB is at 12.6(still below what it should be at a minimum of 13.5) my platelets are back down to 80 from 125 and I'm apparently immuno-suppressed, and banned from public areas such as buses, trains and swimming pools, hence the "later" earlier.   :-(
The hip pain I have been suffering lately means I have to be scanned by the MRI machine thing as soon as it can be arranged.
On the PLUS side my creatinine is down from 180 to 145, that's my Kidney function improving, meaning all the Bacardi I swill through em is WORKING!!!!!!!!

Sunday, 13 November 2011


I thought I'd update you all with the solutions to last weeks photos. Unfortunately I am still practically brain-dead and can't think of what to put on this week, so you'll have to give me a bit more time.

OK, last week we had...... drum roll.......

A simple pineapple and melon moment.

Monday, 7 November 2011

What's That!?! 9

A bit late in the day, but I finally remembered to post the answers to last week's photos.
I'll start with the second photo which was of course Toni's tummy.
 It turns out that Jack Russells have something called "ticking" on their underbellies. When we first got her, she was often called Toni cow. 

The first photo was Capsella bursa-pastoris, or Shepherd's-purse. I knew about this little plant long before I ever saw it. As a child I like many others in the 60's and 70's lived in a world made up of The Magic Faraway Tree, The Wishing Chair, where pixies, goblins, humans and fairies, sorry Paula, furries, all lived side by side. Enid Blyton may no longer be "PC" but she was a very important part of my childhood. Reading and the characters the books contained, were often my only friends. One of my favourite books when very young was The Adventures of Pip, a rather mischievous pixie who often seemed to get into trouble with his friend Jinky, much to the horror of his Aunt Twinkle. In one adventure, Pip used a purse from a shepherd's-purse as a replacement for his Aunt's, which he had lost.
It was that very book that also taught me how to recognise a male blackbird (they dipped their bills in liquid gold) and male sparrows with their black bibs.

This week I give you:

Friday, 4 November 2011

Yes, I remember it well.

I have been meaning to blog about a dream I had for weeks now, but I just kept forgetting to do it. My memory is so bad these days that I have to get Mike to remind me to write a list and then make sure I've got it and then make me use it while I go round the shop and then check it's all out of the trolley and, oh I forgot before we leave the house make sure I have my purse. I think you will all have the picture by now. It turns out that it is all because of my "little op" last year. I had tried a couple of strengths of the standard HRT tablets issued (turns out they are 60 years old and based on the urine of pregnant mares from Kentucky.) They really hadn't suited me at all so after only a month I gave up, thinking "it's only hot flushes I can cope!" Well after 6 months I decided I couldn't cope and it wasn't just the sweats that were a problem, it turns out that the lack of hormones has caused a communication breakdown between my brain, which thinks it is still on honeymoon, and the relevant area responsible with such things. So back to see the doctor who looked EXTREMELY embarrassed at the thought that I might have such depraved thoughts and came up with a prescription which I duly took away. All might have well had I not read the word "bromide" at the end of it's long chemical name. I reckon he thought if he could just keep me quiet.......

So Mike decided that obviously the NHS wasn't going to help me and so we searched for someone to see privately. Eventually we found a female doctor who specialised in gynaecological endocrinology. The Australia fund took a hit, but she soon had it all sussed. It was she who told us about the horse's pee and that not everyone's liver can process it into the right hormone. She asked how my short term memory was and Mike piped up "well she goes to make me a cup of coffee and 45 minutes later I'm still waiting because she's forgotten what she went to do." Yes it is bad. I might remember to make it and then forget to carry it through. At the end of the consultation she wrote to my GP telling him what to prescribe. I went to see him the other day and he duly gave me a prescription, typically enough there is a manufacturing problem and Boots (our national chain of chemists for those outside the UK) cannot get hold of any. Good old Mike rang around all day yesterday and finally managed to track some down fifteen miles away. Why didn't I get the doc to change the prescription? Well he only knows what to prescribe as he was given the name and there is a seven day wait for non-urgent appointments and changing your prescription is non-urgent by definition of the receptionists.

Back to the dream. Mike and I are off to the Myeloma UK infoday in Birmingham at the end of the month and I dreamt that we had been joined by Paula and Bernard. It was very busy and Mike decided as he had an awful lot of writing to do that he should sit at the table while P, B and me sat on the floor with our backs against the wall, a bit like being back at school. Dr. Mark Cook from the QE in Birmingham was up first to talk about current treatments. He stood there in an orange Myeloma UK T-shirt and started to play his ukulele. It was at this point I noticed how his underarm hair was visible at the edge of his sleeves and how his hair and beard seemed to be become more bushy and ginger, so much so that he eventually looked like an orang-utan. Mike kept saying how informative and knowledgeable Dr. Cook was and how he was learning so much. Meanwhile P turned to me and said “Gosh he’s furry.”